1 Week Post-Op

Well that week was a total blur! I’m 1 week out from my surgery, and I’m actually feeling pretty well. (now everyone knock on wood!!) I didn’t talk too much about the surgery (my nerves were so high about it all), so there may actually be people who don’t know what I’m talking about…so let’s back up.

Anyone who reads my blog knows that I have a chronic illness that is very, very complicated and it has many layers to it. POTS effects everything in my body. It’s easy to just explain it away as a “heart condition” but in actuality it is heart, brain, blood pressure, breathing, sleeping, positional, etc etc etc. There is not a system in my body that isn’t impacted by my dysautonomia. So, being a girl (yes…male readers you know where this is going…) and having a large amount of blood loss on a regular basis was really messing with my body. Everything was off and I was unable to recover. People with POTS have been found to have lower amounts of total blood volume anyway…so imagine losing blood on top of not having enough to start with! Luckily for me my team of doctors decided to suggest, and put their stamp of approval on a (dun dun dunnnn) hysterectomy. Now, a lot of people have said “but you’re too young for that!” or “oh you poor thing” but let me just say, please don’t feel sorry for me. I am done having babies, our family is complete, and if you were living in my body from hell (as I so lovingly refer to it), you’d understand. This is the very best thing that I could have have done. This is a HAPPY thing. I am fortunate that they didn’t have to take my ovaries, so no menopause for this girl…not yet anyway! ๐Ÿ™‚ They took out everything else…and I mean everything. Did you know that they recommend taking the tubes out now too? Apparently there is a cancer that can pop up there that is really hard to detect and treat in a timely manner…who knew?! So those puppies are gone too.


So, I went in last Thursday morning at 5:30, I was the first surgery of the day…the best time slot to have! Everyone was wonderful. Everyone reviewed my information from Mass General and adjusted my plan accordingly. I was pumped full of extra saline and potassium to keep my POTS at bay. At one point before surgery I heard my team talking about me in the hallway…”she has POTS, but it’s so well managed!” “I wonder how severe it is? She looks good!” That made me feel pretty good. In fact a week before my surgery at my check up at Mass General we talked about backing OFF of some of my meds because I have been doing so well….but, I’m not one to brag! ๐Ÿ˜‰ Anyway…surgery was a success, everything went exactly as it should have, and I woke up a big groggy bundle of fun. From the sounds of it, I “f*ing loooooved” the nurses, I called my dad and tried to talk to him about my vagina being packed with gauze (lord knows my dad must have been HORRIFIED…and trust me, I am now too…) and I went on a rampage to my mom and husband about someone that I clearly find to be distasteful…we’ll just leave it at that! All in all…I kept the recovery area well entertained.

I had to stay in the hospital overnight so make sure everything was okay. I had to show them I could walk, and pee…those were the two requirements. I had visitors that I vaguely remember, I was hopped on meds for most of the night. They brought flowers (and my in-laws sent me a beautiful bouquet!) and magazines and little stuffed animals, I’m a lucky lady! I just want to say to my husband, my mom, Heather, Tim, Kylie and Audrey…anything you heard come out of my mouth that night is NEVER to be repeated! ๐Ÿ˜‰ …and Tim, delete that voicemail!

I went home the next morning and have been slowly starting to recover. I am able to be up right more, and move around more comfortably. I’m off the medication and I’m trying to keep myself busy. I can feel my body start to decondition from being in bed for those few days. It’s CRAZY how quickly POTS can sneak back in and take over. My tachycardia has been back, and my blood pressure has been bottoming out making me insanely dizzy. Both of those symptoms had been under control for a long time. To combat this I’m just trying to stay up right and retrain my body to get back in line. It’ll be a battle until I’m recovered enough to start walking and really working out again. Every day it’s a fight, but I know I can do this…I’ve done it before and I can do it now.

I would be remiss if I didn’t include that this has been a terribly scary ordeal for me. Surgery is complicated for someone with POTS, and I’m SO SO SO lucky that I woke up without any issues or major long term damages or set backs. I’m hopeful that this will all be worth it and my quality of life will only continue to improve!

I’m out of work for 6 weeks to recover…so wish me luck on finding ways to keep myself busy for that long…maybe some online shopping?!… ๐Ÿ™‚

Until next time โค



so, it’s like that, life?!

I got home from work, sat down and immediately started writing this blog. I wrote it, and then published it only in the POTS groups and forums that I belong to…then I thought, why wouldn’t I share this with EVERYONE? If this blog is an outlet for me AND an avenue for me to spread awareness…REAL awareness, then why am I sugarcoating the truth when things get bad? Why am I holding back and only sharing with others who have my illness? The more I thought about it the more I realized that it might make me uncomfortable to be so raw, and it might make others uncomfortable to think of me this way…but ya know what? Too bad! Let’s all be raw, real, uncomfortable and HONEST together. It’s the only way to truly share this experience. So, I came back, added this new beginning, and I’m sharing it all with you…it’s not pretty (as chronic illness isn’t), so don’t say I didn’t warn you!


So, this is how it’s going to be, life? I’m one of the lucky ones who gets to deal with an illness that doesn’t ever go away? Okay. I’m okay with that. I can deal with it. But, you know what? My kids can’t…and they shouldn’t have to! They shouldn’t have to have a mommy who loses her sh*t over nothing because she’s in the middle of a flare and just cannot fake it anymore. That’s a pretty crappy mommy to have…and I hate that part of my illness…and that part of myself.

I’ve been trying not to accept the fact that I’m in a flare and feeling lousy. I’m exhausted and dizzy and battling a continuous migraine and overall just feeling like complete crap for several days. I can start to feel the depression and the desperation creeping in because let’s face it, going from feeling semi-okay to flaring is enough to make the happiest person feel pretty damn low. I’ve spent my days teaching, forcing the fluids and the meds so I can try and resemble a normal person. I plaster on a smile and keep moving through my day. My BS tolerance level is at an all-time low right now…which in turn has made me tighten the reins in my classroom…instead of having my normal “let’s figure this out” attitude…I’ve had a “cut it out and act like the juniors and seniors that you are!” attitude…yea, I’m probably not winning any popularity contests with them this week! ย The bottom line is by 3 pm I’m spent. I’m toast. I can’t handle ONE more thing. I just can’t. So, today when my 6 year old got off the bus and left his gloves in my classroom…I got home and freaked out. Is it a big deal? No. Not at all. It’s just gloves. Did he deserve it? No. Absolutely not. I just couldn’t handle ONE more thing. When my fully potty-trained three year old refused to go to the bathroom without me because she was digging in her heels, I freaked out. Was it a big deal? No. Not at all. She just wanted some time with her mommy. Not a big deal at all. I just couldn’t handle ONE more thing. I just needed a minute to sit down until the dizziness passed. She looked up at me with her huge doe eyes and I totally broke down. I cried and cried and cried. I apologized to them both over and over and over and over. I told them that I was sorry and I was just feeling sick. Is that the truth? Yes. But, do you think they care why I raised my voice at them? Nope. And I’m still heartbroken over it. The illness took over…it won…and that’s just not okay.ย Even as I write this I feel absolutely horrible and the tears are flowing. My children should not be victims of this illness too…it’s just not fair.



I hate having POTS. I hate everything about it. I hate feeling this sick, I hate having to explain to people why I’m so tired, so pale or so groggy. (and ps…it’s super rude to tell someone who has a chronic illness that they look sick, or tired, or pale, or not themselves!) I’m sick of having to say “well, POTS stands for…no, I’m not talking about marijuana” I hate it. I hate that people seem to forget I’m sick sometimes…sure it’s not something that should be talked about ALL the time…but just because someone has an illness you cannot see doesn’t mean it’s not there. I just hate that. I hate it when people say “you were doing so well, what happened?!” Well…this is the way my illness works…it’s up and it’s down sometimes for no rhyme or reason. It just is…and I hate it. Instead of asking me that…please people, just say “I’m sorry you’re not feeling well, can I help?” By bringing up how well I was doing only makes me feel sad…and makes me feel like I have to rationalize with you why I’m still sick. I just am, and I hate it. POTS and any other chronic illness for that matter, just really, really suck sometimes….and you guessed it, I hate it.


I know the sun will shine again…and all of that other warm and fuzzy stuff that I usually say…I know this is just a flare…and I know that my kids love me and they will be okay. But, for now…for tonight…I’m just sad, defeated, and feeling scared that POTS is starting to take over again…(not going to happen on my watch)…but for tonight, I’m just going to hug my kids…and cry it out.

New Year…(Sort Of) New Samantha

Happy 2016 blog readers!! Seems like 2015 just began, and here we are! Our family rang in the new year as we always do, with matching PJ’s, a gift exchange, a yummy dinner and a trivia game that puts all others to shame. There is no place we’d all rather be than together. Trust me, I know how amazingly blessed I am to come from the family that I do. The way we love each other is just beyond. Okay, enough bragging about my wonderful family! ๐Ÿ˜‰

This new year I am filled with hope, and not just the kind of “fake” hope we all fill ourselves with, with the promise a new year. This is real, genuine hope! At the end of December Dysautonomia International released an abstract regarding a study around the effects of exercise on people with POTS (the Dr. Levine protocol). This was (obviously) a controlled group of POTS patients in a very controlled environment. I want to add in the disclaimer that POTS is a very complicated condition, and no two POTS patients are the same. However, of the patients that complicated the exercise program, in addition to maintaining their medications, there was a 72% cure rate. Yes, CURE rate. These people no longer met the criteria for POTS. They no longer had the 30+ beat per minute heart rate increase upon standing. This. Is. Amazing. Additionally, almost all (the exact number escapes me) of the patients reported having an increase in their quality of life. Also, amazing. Now, before everyone jumps on the “why doesn’t everyone with POTS just do this and make themselves better??” bandwagon, let me explain…people can develop POTS from several different root causes. If the root cause is something that can be cured, then a person has a better chance of a recovery from POTS. For example, a virus. If a virus caused you to develop POTS and the virus is cured, then you stand a better shot at recovery from your POTS symptoms. We are fairly certain that this is my circumstance from my lyme and mono diagnoses. However, if you obtained POTS due to an autoimmune issue or traumatic injury to the body that is non-reversible, you are less likely to see recovery. But, there is ALWAYS hope, for all of us! I am so excited for Dr. Levine to release the specifics of this exercise protocol so I can look at it, and hop aboard! Look for future blogs tracking my journey. It is also important to note that all patients need to be followed by, and monitored by, a doctor if you take on this exercise program. Luckily for me I have a cardiologist who is super supportive, and a cousin who owns a gym…they’ll make sure I don’t fall on my face…and if I do fall, they’ll laugh, and pick me up again. If you are interested, here is the link of the abstract: ย http://www.ncbi.nlm.nih.gov/pubmed/26690066

Additionally, I’ve made some pretty big decisions about my professional life that I’m very excited about! Before Christmas break I was in a funk…a big one…a major one…a massive one. I was down right miserable. I was so unhappy that there were days I actually seriously considered handing in my resignation. I started so many drafts of the letter I could fill a whole notebook. Those of you who know me personally know this is NOT in my nature, and I have a major love affair with my career. Being a teacher is part of who I am in my soul, it felt so terrible to be in that negative place in my mind. It wasn’t just one thing, it was everything…and I couldn’t get on top of it. I really think that I letย the fatigue from my POTS creep into my head and it totally reeked havoc. I needed this break to refocus, re-energize, and really think about what I want…stay tuned for a new year of changes in this arena too! Big things are coming…POTS be damned!


Other than that, I’m just ready to take on 2016 with an open mind ready for health and changes. As I reflect on how I feel today versus how I felt a year ago…I’m not even the same person. I have made so many strides forward. I have WAY more good days than bad…and isn’t that the ultimate goal?! I’m proud of myself for 2015, and I’m ready to tackle 2016 with the same open heart and mind.


Happy New Year!!



Santa, Sugar Plum Fairies and Surgery?!

Ho Ho Ho! Merry…Surgery!? Yes, that’s right, I had the surgery, and I referred to it as merry…it went very, very well! The procedure itself was less than an hour and it was virtually painless. I won’t know anything for about a week regarding if it actually worked (solved the issue), or the results from the samples they sent out…but for now, I’m calling it a success!


If you ready my previous blog, you know how stressed I felt about going under anesthesia. I was nervous that my POTS would cause complications and things wouldn’t go smoothly. I am so happy to report that everything went fine…and above and beyond that, every single person I talked to in the surgical unit KNEW what POTS was. The nurse who checked me in and monitored me, the medical assistant, the anesthesiologist and (of course) my doctor. Not only did they know, they appeared confident in their ability to handle the complexity of my case. My husband kept saying “wow, it seemed like he/she knew what POTS actually was…” It blew our minds. The nurse actually made more comments about how to pull off a hair net than POTS. Hopefully it means that the word is spreading!


I drifted peacefully off to sleep and the next thing I knew, I was groggy, but awake (!!!) in recovery. Rumor has it I told my husband that he looked like my children (phew! ๐Ÿ˜‰ ) and that I wanted a puppy. I hung out in recovery for a few hours while I got my feet under me and they tried to manage my pain. My heart rate and blood pressure were stable the entire time…THIS WAS HUGE! My body actually behaved itself!


By the time I was discharged I was very sore, and very very tired…but also VERY VERY excited! It just so happened that two of our best friends were in the hospital that same day…delivering TWINS. I can honestly say that any bit of soreness and pain just melted away when I put those newborns in my arms. Holding them gave me such hope for the future. It sounds cliche but it really made me feel like everything was right in the world. It was one of those rare moments in life when the world stops for a second and you fall in love instantly. Thank you Nicki and Marc for bringing such amazing little people into this world. ๐Ÿ™‚ They gave me a feeling of hope for the future.

So, for all my potsie readers…do your research, surround yourself with a good medical team, find a doctor you trust, and know that surgeries can be okay. I think a little bit of fear in this situation is good, because it means you will cover your bases…but I hope this blog will serve as a little ray of hope. Everything I read beforehand were horror stories…but that’s not always the outcome!

Merry Christmas to you all, and thanks for reading and supporting me as I make my way through this journey.


‘Tis the Season…


Wow! Welcome to December! It feels like 2015 just began, and just like that, it’s over! What a year it’s been! Full of ups and downs and everything in between. But, before I turn into an emotional sap, let’s keep this blog moving!

The holidays are in full swing in our household. We hosted Thanksgiving at our house, immediately followed by putting up our Christmas Tree, covering our house in white lights, the return of our Elf on the Shelf, Christmas movies, Christmas parades and (like most of us…) trying to fit everything into this jammed packed full time of year! Phew. I’m exhausted just typing it out!

The good news is this…I’ve been doing okay! The major battle these days with POTS has been fatigue. Not just the “oh, I’m a little sleepy” kind…the “there is no way you are getting your ass out of bed until you sleep for 3 more hours” kind! It’s a challenge when I have to be at work at 7:30, and at the hockey rink on the weekends. But, we push through it and keep plugging away. Thankfully I have the best husband ever and he does morning duty with the kids…if I had to do that…well, I just couldn’t do that! ๐Ÿ™‚ All in all (for right now!), POTS is something that I’m living with, not something I’m struggling with and that’s pretty nice! Now, everyone who is reading this PLEASE knock on wood, I do NOT want to jinks myself!! ๐Ÿ™‚


If I’m perfectly honest though, I felt the need to blog tonight and I wasn’t really sure why. Typically I blog after a big event, or after something major has changed with my health. Tonight, that’s not the reason. As I sit here snug in my bed, I think the reason is more because I’m a ball of nerves about this upcoming week…for several reasons, and I clearly just want to let it all out! One reason being that this time of year always sneaks up on me and then hits me like a ton of bricks. When I was 19 I experienced the loss of a person in my life…a person that I was not ready to lose, no one was. When you are 19 you feel young and invincible…you feel like you have the world at your feet and everything is a possibility. It just never crossed my mind that a possibility would be losing someone in a tragic, careless, horrific, car accident. 18 year old’s are not supposed to die. They just aren’t. And it still haunts me…even to this day. December 12th is just the worst day of the year. On this same date three years later my grandmother, the sweetest woman to walk the planet, also passed away, from Alzheimer’s. Her death was far more easy to comprehend…she was an “old” lady, she was suffering, and it was her time to go. Still though…December 12th is just crap. I try to honor this day by lighting a candle for them…remembering the silly stories…and hugging my babies extra tight. I try to make it a positive…but sometimes the sadness just creeps in.


Secondly, I’m set to have a minor procedure (I like that word FAR better than minor surgery) done on Thursday, and I’m terrified. Now, before anyone freaks out, it’s not a huge deal, and I’m going to spare the male readers of this blog the specifics. It’s a lady issue, and the doctors are trying to save me from having to have a full blown hysterectomy at 32…which I appreciate! None the less, there is anesthesia involved and that’s where it can get complicated with POTS patients. I cannot tell you how many stories I’ve read of potsies having a really hard time going under, staying under, and waking back up. Sounds nice doesn’t it?! Because we have no control over our heart rate, breathing rate, and blood pressure…and our bodies tend to just throw these systems out of wack on a whim, it can make for a very complicated situation. Deep down I know that it will all be fine (it just has to be!)…these doctors know what they are doing, and I’ve voiced my concerns. They’ve even been in contact with my specialist at Mass General to make sure all the i’s are dotted and t’s are crossed…but still!! There is just a level of anxiety around this that I cannot kick. I have been doing well the past few weeks, I don’t want to move backwards.

Finally, with these things on my plate, the everyday little stuff (the grad school homework, the errand running, the stress at work, the junk that everyone always deals with…) just seems like it can be too much. My fuse is a lot shorter than it normally is. I can be punchy at times, over sensitive at others and bitchy more often than I’d enjoy ๐Ÿ˜‰

…but I’m ALWAYS 100% grateful for my family and friends who love and support me no matter what. It means the world to have a group of people who help when it gets dark like this for me. I just love you all so much.


Anyway, I’ll make sure to blog this crazy experience…I’m really hoping that I can publish a blog that will make other POTS patients feel HOPEFUL about undergoing a medial procedure. Let’s hope I’m that statistic where there were no complications and everything worked out fine!

Now, I’m serious…everyone knock on wood!!


Time to brag about my Colby <3


One of the most difficult parts of having an illness, is trying to manage it while still being a good mommy. As I’ve talked about in several other blogs, it’s a constant battle between trying to take care of my health, and my children. My number one job in this world is raise these amazing babies, and there are times when I feel like I’m failing. I feel like they get robbed…POTS is robbing them of healthy time with their mother, and I hate POTS for that. BUT! Something amazing happened this week that reminded me even though this life might not be what I consider to be *perfect* for them, they are pretty perfect regardless!


For the first time I was on the parent end of a parent-teacher conference. I’ve done 8 years worth of these conferences being the teacher, but I was SO nervous to be the parent. I’m not sure why I had so much anxiety over the meeting…I love Colby’s teacher, and I know that he’s as smart as a whip. But, being the first time, and being so worried about my kids, I wasn’t sure what to expect. To make a long story short, Colby is a total rock star at school. He is meeting standards and learning new skills everyday. His math skills, reading and writing are progressing so quickly, one of his pieces of art work was chosen to be displayed in an art show, and he is quite the athlete (no surprise there!) in PE class. All of that was so nice to hear…but the part that really blew me away was that each and every teacher told us that Colby is kind, a good listener, a great friend, always follows directions, and is a pleasure to have in school. He earns citizens awards for his positive attitude and for overall being a great school citizen. Even writing those words and thinking over those conversations brings tears to my eyes right now. Colby really is such a kind person at heart, and it makes me so proud.


I truly do believe that POTS syndrome may be part of the reason he is who he is. He can be so understanding and sympathetic when I’m not feeling well…and those qualities are translating into his life at school. He is always rubbing my back and tucking me in when I’m in the middle of a flare. That little boy has the biggest heart. So, thank you POTS for providing my children the experiences that will help to make them empathetic, wonderful people. (yes…I just THANKED POTS for something…don’t get used to it, people!) ๐Ÿ™‚


I’m so happy that Sophie has such a positive role model to help her grow up!


On the health front…it’s been a pretty crummy week! I’ve been fighting off the cold that the kiddos had, and the cold finally won. Coughing, the shakes, body aches, sweats, sore throat…you name it, Paul and I have it. Ugh. As my POTS readers know, cold meds aren’t safe for us because they all tend to mess with blood pressure, which is a no-no. So, I’m trying to flush it out with water and Tylenol. As of print time…the cold/flu is winning! ๐Ÿ˜ฆ ย Here’s hoping it passes quickly and doesn’t cause a major flare!

Until next time! ๐Ÿ™‚


party_32Yep, you read that correclty…32. I’m about to turn the big 3-2. Now, if you’re younger than me, please keep all of the “omg she’s sooooo old” to yourselves, and if you’re older than me, I’ll save you the trouble and openly admit that 32 is still pretty young in the grand scheme of things. Okay, now that we have that all squared away I’ll move along…

For some reason the thought of this birthday is hitting like a ton of bricks. It took me a long time to figure out exactly why. I’ve always loved birthdays! My parents always made a pretty big deal of them…we got to pick our favorite dinner, we had cake, gifts and parites…birthdays were a big fun event. I’ve carried that tradition on with my own children…we make a big big deal about it. It’s important to celebrate the people we love! I began to wonder if I was dreading getting older? That seemed silly…32 really isn’t old…and I do believe that age is just a number, it’s all in how you feel (..and with POTS sometimes I feel 100…but I digress…)…and trust me, working with high school students all day long, they keep me young! I’m up to date on my current slang terms “bae, basic, whip” yep, I know them all! ๐Ÿ˜‰ “Pang, you’re so awesome for a 30 year old”…one of my 16 year old students informed me on Friday…this is the biggest compliment you can get from a 16 year old! ๐Ÿ˜‰


Then I began to wonder, can I possibly be having a mid-life crisis?! No way. I love my life. I have no regrets. I have no desire to buy a convertible and party all night long…that just sounds exhausting! ๐Ÿ™‚ Then, it hit me. When I turned 31 I was bound and determined to not be sick for a whole other year. I told myself that 32 would be different. I would be able to celebrate my birthday in HEALTH…and well, I’m not there. Laying in bed one night I actually said these words out loud to my husband and I began to cry like a little girl…yep, this is DEFINITELY why this birthday is feeling so terrible.

Now, please do not get me wrong, and do not mistake my break down for defeat! I’m still up for this battle, and I’m still ready to fight this. I wake up every day and continue to try to kick POTS ass…but, there are some moments that still hurt so deeply I can’t get out of my own way. I’m still adjusting to my life and this new normal. I still yearn for the days of Happy HEALTHY Birthdays…and maybe I will see another one someday…and maybe I won’t. But, I think I need to give myself a chance to feel all these things and accept the fact that some days it’s okay to grieve the person I was and the life I was expecting to lead. That’s normal right?! I sure hope so!


So, here’s to turning 32…and instead of promising myself that I will be cured this year, I am going to promise myself that I will keep fighting this year! I can feel big changes coming my way, and I can’t wait! 32 will be the year I graduate from grad school, the completion of my 8th year teaching, my 9th year of marriage, my 7th year of being a mommy…there is a lot of good coming…so 32 here I come!


October is dysautonomia awareness month!


October is dysautonomia awareness month…to celebrate this event, my body has decided to throw itself into the biggest flare I’ve had since last December…if you’re a dedicated reader of this blog you know that last December was the lowest of the low for me. Thus far, October hasn’t been any better. I’ve been experiencing tachycardia…at time in the 200 beats per minute range, pre-syncope, extreme dizziness, migraines, intense brain fog, and an overall feeling of extreme fatigue. Sounds like fun doesn’t it?! ๐Ÿ˜‰ I’ve continued to manage my day to day…but just barely. By the time I get home from work I need to lay down for pretty much the rest of the night. It’s been hard on my husband, on me, and on my children. That by far is the worst part. I hate when I hear them say “Mommy can’t…she’s tired” it breaks my heart into a million pieces. I can feel the depression of chronic illness floating in, and I can cry at the drop of a hat. It just really hasn’t been a good few weeks.

12038454_10102653432596659_7768277362766908275_n(my world)

So! How have I been trying to cope?! Well, this time, I’m trying not to hide what’s going on. I’ve been much more upfront with my support network…”this just really isn’t going well”…this was an incredibly difficult shift for me. I put aside my natural instinctย to say “I’m okay…” and I told the truth. In turn, they have stepped up in amazingly helpful ways!

My sister made us a delicious dinner and her boyfriend (one of my best friends) brought it over and ate with me…

12063541_10207973075144243_4766776010123609581_n(yummy stuffed shells!)

My mom, sister, brother-in-law, and second mom came over and deep cleaned my house…we’re talking they scrubbed all of theย baseboards, behind the stove, the dryer vent, in between the tiles…every nook and cranny this house has! It’s still sparkling!

11209701_10102663320655909_5917807805694324115_n(Mom, Bryce, Justine, Lynn…quite the cleaning crew!)

My best friends took my babies for the day and totally spoiled them rotten! The kids came home so happy and I was able to have a break for an entire day.


My cousin brought my nachos, breadsticks and ice cream for dinner…then we sat and watched BRAVO for a few hours…needless to say this is ALWAYS helpful! ๐Ÿ˜‰

12109281_10102653433564719_7528957097574244663_n(My cousin, Amy โค )

My aunts have checked in, my dad came over after work and played with the kids, my in-laws have come down (an hour drive for them!) to cover the kids so I can attend class or get my haircut, my co-workers are checking in and making sure I don’t need anything, friends are texting, messaging and letting me know they are there…the list goes on and on and on…

12088551_10102654684293249_71483194400276059_n(Paul, Millie and Sophie!)

It’s because of this help that I can continue to manage. Does it suck? Yes. Is it hard? Yes. Does the depression scare the crap out of me? YES! But, I know that this is just a flare, and that I will get on the other side of this at some point.

Additionally, another dark side of being ill is that you will lose some people in your life too…or your relationship with them will drastically change. Not everyone is up to the challenge of sticking around as you battle this. Not everyone will understand, and not everyone will be kind to you. Your feelings will be hurt. It’s not a good thing…and it’s not a bad thing…it just is. Instead of trying to fight and hold on…I’ve learned that is far easier to just let it go. There are much bigger battles ahead. Hold on tight to the people who listen, who care, who forgive you for not being yourself and who treat you right…those are the people who will help you see the good days again! โค


Sometimes It’s Lonely.

Well, we’re off to another school year with a bang! Colby transitioned into kindergarten like the pro that he is, Sophie is doing great being the “big kid” at daycare without her big brother around, I have been making it through my workday in an *almost* fully upright position and have started my last year of graduate school, and Paul continues to be super-dad-super-husband helping me in every way that he can. Really, I can’t complain! I was so nervous about all of these transitions, these times can be challenging for any family, let alone a family that has a mommy who is chronically ill.

As you saw in my previous posts my summer was wonderful. I felt good, I felt rested, and I felt more in control of my life. It was a pretty big blow to my living on cloud 9 when the school year started up again. I can no longer sleep when I need to, take breaks when I need to, or just put my feet up when I need to. When you’re a teacher, your world revolves around your students who need you to be your best…all the time. It’s a massive amount of pressure for a person who sometimes struggles to stand. (literally…people with POTS use three times the energy of a healthy person just by standing up…fun…) Now, do I put a lot of this pressure on myself, maybe unjustly? YES! It’s my type A, go-getter, fake it till you make it personality. But, none the less, it’s a challenge…and I continue to work on that.

Perhaps the biggest challenge right now is how alone I can feel. I can be surrounded by my closest family and friends and still feel like I’m on an island all by myself. It’s a strange feeling that I really haven’t encountered before. I read in another potsie blog that the longer she was ill the more she started to feel completely disconnected from others, and I guess that’s what’s going on with me? Maybe? I feel so annoyed with my body and my situation that at times it’s very isolating. Because this illness isn’t something that a lot of people have, or that a lot of people understand, I just feel like no one else in my life can actually relate to my world. I also feel like people must be thinking “okay, we get it, you’re sick, get over it already!” although no one has ever said that to me. I know that if I feel exhausted and annoyed with my body, other people must too! Who could blame them!? ๐Ÿ™‚ So, I tend to turn inward and keep more to myself…this is a slippery slope I’m on…and I know it! I want so much to reach out to other people sometimes…but it’s just hard. So, here I sit…sometimes very lonely.


So…what can people do to help their friends and family who are dealing with a chronic illness?? I’m so glad you asked ๐Ÿ˜‰ ย Here are some things that have helped me to feel less alone and a little more supported!

  1. Make them laugh. A lot and as often as you can!
  2. Check in with them…not about their illness…just with how they are doing!
  3. Text them “I love you” or “I’m here if you need anything”
  4. Cook them a meal so they don’t have to…because they will not ask you to do this!
  5. Mow their lawn, shovel their driveway, weed their flowers etc…help them out because they will NEVER ask!
  6. Hug them…a lot…even if they don’t want a hug ๐Ÿ™‚ (I’m not a HUGE hugger…but this one really does help!)
  7. Take their kiddos out for an afternoon so they can nap…because they will NEVER ask!
  8. Love them unconditionally…and make sure they know that
  9. Text them a favorite memory to make them smile…”remember when we…..that was so fun”
  10. …chocolate…always chocolate! ๐Ÿ˜‰
  11. “you look great!” even if their eyes are tired and their hair is a mess…
  12. and my all time favorite…”wow, have you lost weight?!” even if you know damn well they haven’t!

And for the other POTS patients reading this, or for anyone with a chronic illness…we may feel alone and isolated sometimes, and I think that is just the nature of the beast, but, we’re really not! We have to remember that this is a marathon, not a sprint! This is a day by day situation that is ever evolving. We need to ask for help…if we have a bad day, cry it out, sleep it off and start again tomorrow. Remember…”no one said it would be easy…they said it would be worth it!”